FURTHER INFORMATION LEAFLET (supplementing the main Information Leaflet)

Size: px
Start display at page:

Download "FURTHER INFORMATION LEAFLET (supplementing the main Information Leaflet)"

Transcription

1 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 1 FURTHER INFORMATION LEAFLET (supplementing the main Information Leaflet) The purpose of UK Biobank is to set up a resource that can support a diverse range of research intended to improve the prevention, diagnosis and treatment of illness, and the promotion of health throughout society. If anything is not clear, or more information is required, please telephone free of charge on to talk to a member of the project team. More information about UK Biobank is also available at Contact details: UK Biobank 1-2 Spectrum Way Adswood Stockport Cheshire SK3 0SA ukbiobank@ukbiobank.ac.uk Freephone:

2 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 2 2

3 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 3 Who is involved in UK Biobank? UK Biobank has been set up, and is funded, by the Department of Health, Medical Research Council and Scottish Government, and by the Wellcome Trust medical charity. It is also supported by the Welsh Assembly Government, health research charities (such as the British Heart Foundation, Cancer Research UK and Arthritis Research Campaign) and the National Health Service. This major medical research project is being run as a not-for-profit charity with initial funding of about 62 million. The Chair of its Board of Directors is Sir Alan Langlands, who was previously Chief Executive of the NHS. Details of Board members are given on our website at UK Biobank has its headquarters at Manchester University. The Principal Investigator and Chief Executive is Professor Rory Collins, who is also British Heart Foundation Professor of Medicine & Epidemiology at Oxford University. Other senior members of the team in Manchester are the Executive Director, Dr Tim Peakman, and the Chief Scientific Officer, Dr Tim Sprosen. This national project involves more than 20 collaborating British universities grouped into six teams (with several other universities also contributing to its success in different ways): Central England: Oxford University. Fosse Way: Birmingham, Leicester, Nottingham, Sheffield, Warwick, Exeter and Plymouth Universities. London: Imperial College, University College, Kings College and Queen Mary University of London. Northwest/Wessex: Manchester, Keele and Southampton Universities. Scottish: Aberdeen, Dundee, Edinburgh and Glasgow Universities, and the Information and Statistics Department of NHS Scotland. Welsh: University of Wales at Bangor, Cardiff and Swansea. 3

4 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 4 The UK Biobank Steering Committee represents the investigators at these universities, and is responsible for the projectʼs scientific design and conduct. Professor Collins is the Chair, and the other members are Professors Valerie Beral, Paul Burton, Paul Elliott, Alan Silman, Jill Pell and John Gallacher. The Steering Committee, Board and funders receive independent scientific guidance from an International Scientific Advisory Board. UK Biobankʼs research activities are also reviewed and approved by the North West Research Ethics Committee. Further guidance and monitoring is provided by an independent Ethics & Governance Council ( chaired by Professor Graeme Laurie, Professor of Medical Jurisprudence at Edinburgh University. What does UK Biobank involve? UK Biobank is a major medical research project on the impact on health of lifestyle, environment and genes in 500,000 people currently aged from all around the UK. This age group is being studied because it involves people at risk of developing serious diseases including cancer, heart disease, stroke, diabetes, dementia over the next few decades. The National Health Service treats the single largest group of people anywhere in the world, and keeps detailed records on all of them from birth to death. Consequently, follow-up of UK Biobank participants through routine medical and other health-related records will allow identification of those who develop a wide range of disabling and life-threatening conditions. This will make UK Biobank a uniquely valuable resource for medical and other health-related research. Scientists have known for many years that our risks of developing different diseases are due to the complex combination of different factors: our lifestyle and environment (exposures); our personal susceptibility (genes); and the play of chance (luck). Because UK Biobank will involve thousands of people who develop any particular disease, it should be able to show more reliably than ever before why some people develop that disease while others do not. This should help to find new ways to prevent death and disability from many different conditions. 4

5 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 5 People to invite into UK Biobank are identified from NHS records. The only information used, in confidence, for this purpose is name, address, sex, date of birth, NHS/CHI number and general practice (with no medical information). These details are processed centrally on behalf of the NHS, in accordance with the Data Protection Act, to generate invitation letters. General practitioners are advised that people registered with their practices may be invited to take part. Taking part in UK Biobank involves participants in: Attending a local assessment centre for about 2 hours to answer some simple questions, to have some standard measurements, and to give small samples of blood (about 3 tablespoons) saliva and urine. Agreeing to allow their health to be followed for many years by UK Biobank directly through routine medical and other healthrelated records (e.g. occupational health). Being re-contacted by UK Biobank at some time in the future to answer more questions and/or attend another assessment visit (including questions, measurements and samples) although giving such extra help would be entirely optional. Agreeing to have their samples and health information stored and used, in confidence, by approved researchers for many years. A very wide range of tests will be done on the blood, saliva and urine samples for approved medical and other health-related research, and it is impossible to predict all of the uses to which the samples might be put during the next few decades. But, since none of these individual test results will be fed back to participants, their doctors or anyone else, taking part in UK Biobank should not have any adverse effects on participants (including their employment status or ability to get insurance). By analysing answers, measurements and samples collected from participants, researchers may be able to work out why some people develop particular diseases while others do not. Taking part in UK Biobank is not intended to help participants directly, but it should give future generations a much better chance of living their lives free of diseases that disable and kill. 5

6 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 6 What happens to the blood, saliva and urine samples? Small samples of blood, saliva and urine are collected from each participant during the assessment visit. The staff put them into several different tubes which allow a wide range of different measurements to be made. Some of the tubes are then spun in the assessment centre to allow immediate separation of the blood into its constituent parts (red cells, white cells, plasma or serum). At the end of each day, the samples are transported overnight to the UK Biobank laboratory in Manchester for further processing and storage. Each sample is separated into several smaller tubes for frozen storage. Processing also includes preserving the white blood cells in such a way that they can be grown and more genetic material produced in the future. As the laboratory may receive up to 1000 samples each day, this process is highly automated and samples are bar-coded (as in a supermarket) so that computers can keep track of them. By the end of recruitment, UK Biobank will be storing about 15 million individual tubes of blood, saliva and urine. Samples from each participant are stored in two separate locations in order to protect this precious resource against loss. One location holds the working store that will be used first for any approved research studies, and the other location holds the back-up store that will be used when samples in the working store have been used up. The working store is a huge purpose-built -80 C freezer room that uses computer-controlled robots to put away and retrieve the samples. This allows UK Biobank to keep careful track of the location of each participantʼs samples, and to retrieve those that are needed for particular studies rapidly and accurately. It will be the first such automated store anywhere in the world, and has been developed jointly with specialist British companies. The back-up store holds the reserve samples from participants in several dozen liquid nitrogen tanks at about -200 C. This very low temperature ensures that even very unstable things in the blood can be measured many decades later. The back-up store does not use robots because these samples do not need frequent retrieval. But it still uses computers to keep track of each participantʼs samples, and automated systems to control the temperature. 6

7 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 7 The UK Biobank resource will become increasingly valuable for medical and other health-related research over the years, so it is likely that these samples will be kept for several decades. However, if and when it is thought that the resource has reached the end of its natural life, then all of the samples will be destroyed. How is the confidentiality of participants protected? Confidentiality of participantsʼ data is a top priority for UK Biobank. Stringent security measures to prevent unauthorised use are in place, including: access control, computer security, confidentiality agreements and staff training. Information that is likely to identify participants (such as name, address, date of birth) is removed from their other study data and samples as soon as possible after collection. All data are stored anonymously in UK Biobankʼs database, with personal identifiers kept separately under strict control with restricted access. It is necessary to be able to link participantsʼ identifiers with their personal data (including any test results) in order to be able to add information obtained subsequently from medical records or other sources during follow-up. This is done using a carefully controlled code, which can be accessed by only a limited number of UK Biobank staff solely for the purposes of such linkage. Computer security systems are in place to block unauthorised access (for example, by hackers ) to the study computers that hold personal information. In particular, UK Biobankʼs computers are protected against direct contact from other computers and the internet by special firewall software (as used in commercial banks). Also, the level of access that is allowed to staff within UK Biobank is controlled by unique user names and passwords, and restricted on the basis of their need to carry out particular duties. Data or samples provided to researchers outside UK Biobank will not include any personal identifiers. Moreover, such researchers must confirm that they will not make any attempt to identify individual participants or to contact them directly. UK Biobank staff also sign confidentiality agreements as part of their job contracts, and are trained in the appropriate handling of personal data. 7

8 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 8 Who will be able to use UK Biobank information and samples? UK Biobank is the legal owner of the study data and sample collection. It will serve as the steward of this precious resource, maintaining and building it for the public good in accordance with its access policy, which is available at In signing the consent form, participants transfer all property and intellectual property rights in their samples to UK Biobank. Information and samples from UK Biobank participants will be available only to researchers who have relevant scientific and ethics approval for their planned research. No one will be given exclusive or preferential access to the UK Biobank resource. Results from any tests made on participants or their samples will be put in the study database so that they are available to all other approved researchers. There will also be a requirement to publish the results of all research based on UK Biobank so that people can benefit from it. Pharmaceutical and other health-based companies will be able to access the study data for approved research, as this may help in the identification of new treatments. All users, whether employed by universities, government, charities or commercial companies, will have access only to anonymised information and will be held to the same scientific and ethical standards. Insurance companies and employers will not be given any individualʼs information, samples or test results, and nor will we allow access to the police, security services, relatives or lawyers, unless forced to do so by the courts. Access will only be granted voluntarily under strict controls to researchers whose studies have been approved by UK Biobank. Participation in UK Biobank is entirely voluntary. After giving signed consent, participants can withdraw at any time (see below). The level of withdrawal may range from No further contact (but allowing continued use of information and samples, and further information to be obtained from records) to No further use (requiring destruction of all of the participantʼs information and samples). 8

9 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 9 The interests of participants and the public are at the heart of UK Biobank. An Ethics and Governance Framework has been written to help make sure that participants are protected, and that the resource is used only for scientifically and ethically approved research (this document is available at The independent Ethics & Governance Committee will monitor the conduct of UK Biobank and the development and use of the resource (for more information, see: How do participants withdraw if they want to do so? UK Biobank will be most valuable if few people do withdraw from it, so potential participants are asked to discuss any concerns that they might have with a member of the project team before agreeing to participate. After giving their signed consent, however, participants can withdraw at any time either by telephoning (Mon-Sat; 8.00am to 7.00pm) or by writing to the coordinating centre office. This will allow particular concerns to be discussed and the desired level of withdrawal to be determined: No further contact : This means that UK Biobank would no longer contact the participant directly, but would still have their permission to retain and use information and samples provided previously and to obtain and use further information from their records. No further access : This means that UK Biobank would no longer contact the participant or obtain further information from their records in the future, but would still have their permission to use the information and samples provided previously. 9

10 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 10 No further use : This means that, in addition to no longer contacting the participant or obtaining further information about them, any information and samples collected previously would no longer be available to researchers. UK Biobank would destroy their samples (although it may not be possible to trace all distributed sample remnants) and would only hold their information for archival audit purposes. Participantʼs signed consent and withdrawal would be kept as a record of their wishes. Such a withdrawal would prevent information about them from contributing to further analyses, but it would not be possible to remove their data from analyses that had already been done. If, having discussed their concerns and options, a participant decides to withdraw then UK Biobank would seek written confirmation of this decision from the participant or someone able to act on their behalf. What are the values on which UK Biobank is based? UK Biobank is a public good resource, and we are committed to respecting the human rights of participants. Most particularly, UK Biobank has an ethical and legal commitment to respecting the confidentiality and privacy of information about participants and to managing that information in compliance with the principles of data protection. This means that all information will be stored and processed securely, and used only for lawful purposes. 10

11 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 11 Who to contact about any questions or concerns? Anyone who has any questions about UK Biobank can telephone us free of charge on (Mon-Sat; 8.00am to 7.00pm) to ask for more information. Alternatively, those with access to the internet (perhaps at home, work or in the local library) can get more details from For any concerns or complaints about anything to do with the project then please telephone us on , and ask to speak directly to one of the study organisers. Alternatively, write to the person in charge: Professor Rory Collins UK Biobank 1-2 Spectrum Way Adswood Stockport Cheshire SK3 0SA ukbiobank@ukbiobank.ac.uk 11

12 BIO CAT2 FUR V001:Layout 1 7/15/09 1:11 PM Page 12 UK Biobank Limited (company no ) is a registered charity in England & Wales ( ) and in Scotland (SC039230) BIO CAT2 FUR V001

INFORMATION LEAFLET. If anything is not clear, or if you would like more information, please

INFORMATION LEAFLET. If anything is not clear, or if you would like more information, please BIO INFOBK 1492 0410:Layout 1 21/04/2010 15:24 Page 1 INFORMATION LEAFLET You are being invited to take part in a major medical research project called UK Biobank. The purpose of UK Biobank is to set up

More information

UK Biobank: Fostering public trust through innovative ethical governance. Graeme Laurie

UK Biobank: Fostering public trust through innovative ethical governance. Graeme Laurie UK Biobank Ethics and Governance Council UK Biobank: Fostering public trust through innovative ethical governance Graeme Laurie Chair, UK Biobank Ethics & Governance Council An independent council funded

More information

PARTICIPANT INFORMATION

PARTICIPANT INFORMATION PARTICIPANT INFORMATION IMPERIAL POPULATION BIORESOURCE TISSUE BANK (PART OF NIHR BIORESOURCE) In the UK around 20 million people are said to be living with a long-term condition such as diabetes or heart

More information

U.K. Familial Ovarian Cancer Screening Study (UK FOCSS) Phase 2 Patient Information Sheet

U.K. Familial Ovarian Cancer Screening Study (UK FOCSS) Phase 2 Patient Information Sheet U.K. Familial Ovarian Cancer Screening Study (UK FOCSS) Phase 2 Patient Information Sheet 1. Invitation You are being invited to take part in a research study. Before you decide it is important for you

More information

Version 1.1 1 18/04/11

Version 1.1 1 18/04/11 Department of Neurology Southern General Hospital 1345 Govan Road Glasgow G51 4TF PRoBaND: Parkinson's Repository of Biosamples and Networked Datasets Information Sheet for: Relatives of patients with

More information

Dundee e-health Centre of Excellence

Dundee e-health Centre of Excellence Dundee e-health Centre of Excellence 1 Arthritis Research UK, British Heart Foundation Cancer Research UK Economic and Social Research Council Engineering and Physical Sciences Research Council National

More information

Taking Part in Research at University Hospitals Birmingham

Taking Part in Research at University Hospitals Birmingham University Hospitals Birmingham NHS Foundation Trust The Trust provides free monthly health talks on a variety of medical conditions and treatments. For more information visit www.uhb.nhs.uk or call 0121

More information

Imaging Markers of Brain Network Dysfunction in Multiple Sclerosis

Imaging Markers of Brain Network Dysfunction in Multiple Sclerosis Faculty of Medicine & Health Sciences School of Medicine Radiological Sciences Research Group The University of Nottinham University Park Nottingham NG7 2RD t: +44 (0)115 823 0018 f: +44 (0)115 823 0004

More information

Understanding Clinical Trials

Understanding Clinical Trials Understanding Clinical Trials The UK Clinical Research Collaboration (UKCRC) is a partnership of organisations working to establish the UK as a world leader in clinical research, by harnessing the power

More information

Over-the-counter Genetic Susceptibility Tests

Over-the-counter Genetic Susceptibility Tests Over-the-counter Genetic Susceptibility Tests Information for individuals, families and non-specialist health professionals Over-the-counter Genetic Susceptibility Tests In recent years, there has been

More information

How To Share Your Health Records With The National Health Service

How To Share Your Health Records With The National Health Service HOW WE USE YOUR PERSONAL INFORMATION Information Leaflet Your Health. Our Priority. Page 2 of 9 Introduction This Leaflet explains why the NHS collects information about you and how it is used, your right

More information

1. General Information About The Mitochondrial Disease Biobank

1. General Information About The Mitochondrial Disease Biobank Name and Clinic Number IRB # 09-002265 00 Consent form approved November 6, 2013; This consent valid through August 6, 2014; 1. General Information About The Mitochondrial Disease Biobank Study Title:

More information

Information for patients and the public and patient information about DNA / Biobanking across Europe

Information for patients and the public and patient information about DNA / Biobanking across Europe Information for patients and the public and patient information about DNA / Biobanking across Europe BIOBANKING / DNA BANKING SUMMARY: A biobank is a store of human biological material, used for the purposes

More information

The Care Record Guarantee Our Guarantee for NHS Care Records in England

The Care Record Guarantee Our Guarantee for NHS Care Records in England The Care Record Guarantee Our Guarantee for NHS Care Records in England Introduction In the National Health Service in England, we aim to provide you with the highest quality of healthcare. To do this,

More information

Immune Cell Studies in Type 1 Diabetes (ISTID) INFORMATION SHEET FOR ADULTS WITH NEWLY- DIAGNOSED DIABETES. Sponsored by Cardiff University

Immune Cell Studies in Type 1 Diabetes (ISTID) INFORMATION SHEET FOR ADULTS WITH NEWLY- DIAGNOSED DIABETES. Sponsored by Cardiff University Immune Cell Studies in Type 1 Diabetes (ISTID) INFORMATION SHEET FOR ADULTS WITH NEWLY- DIAGNOSED DIABETES Sponsored by Cardiff University Chief Investigator Wales: Professor Colin Dayan Address: Centre

More information

Consent Form: Example 2 (DNA Sequencing)

Consent Form: Example 2 (DNA Sequencing) Consent Form: Example 2 (DNA Sequencing) Important note: This model language was developed for the NHGRI Medical Sequencing Project (MSP). It is included here only as an example of how to describe a sequencing

More information

Blood Biobanking Chances and Risks. The Bavarian Red Cross Blood Donor Biobank

Blood Biobanking Chances and Risks. The Bavarian Red Cross Blood Donor Biobank Blood Biobanking Chances and Risks The Bavarian Red Cross Blood Donor Biobank EORTC-NCI-ASCO Meeting - November 2007 Outline Types of biobanking Why blood biobanking? Why blood banks? Why the Bavarian

More information

Body, Brain and Tissue Donation Pack

Body, Brain and Tissue Donation Pack Body, Brain and Tissue Donation Pack Information on donating your body, brain or tissue for anatomical examination, research or education and training Contents 3 Donation and the Human Tissue Authority

More information

Patient Information Whose information is it anyway? Your health records

Patient Information Whose information is it anyway? Your health records Patient Information Whose information is it anyway? Your health records Derriford Hospital Derriford Road Plymouth PL6 8DH Tel: 0845 155 8155 www.plymouthhospitals.nhs.uk Your health record We ask you

More information

Summary of the role and operation of NHS Research Management Offices in England

Summary of the role and operation of NHS Research Management Offices in England Summary of the role and operation of NHS Research Management Offices in England The purpose of this document is to clearly explain, at the operational level, the activities undertaken by NHS R&D Offices

More information

Information for Egg Donors for Research

Information for Egg Donors for Research Newcastle Fertility Centre at BioScience Centre, International Centre for Life Times Square, Newcastle upon Tyne, NE1 4EP Telephone: 0191 2138213 Fax: 0191 2138124 www.nfc-life.org.uk Information for Egg

More information

Foundation Programme 2014 Recruitment Stats and Facts Final report December 2014

Foundation Programme 2014 Recruitment Stats and Facts Final report December 2014 Foundation Programme 2014 Recruitment Stats and Facts Final report December 2014 Summary information for FP and AFP 2014 recruitment 1. Applications submitted: A total of 7974 applications were submitted,

More information

Architecture and the Built Environment; building science, civil engineering, construction

Architecture and the Built Environment; building science, civil engineering, construction UK universities were selected to participate in Science without Borders UK based on their excellence in the SwB priority areas; this was determined either by an exceptionally high student satisfaction

More information

YOUR MEDICAL RECORDS AN UPDATE PROVIDED BY THE OTFORD PATIENT PARTICIPATION GROUP (PPG)

YOUR MEDICAL RECORDS AN UPDATE PROVIDED BY THE OTFORD PATIENT PARTICIPATION GROUP (PPG) YOUR MEDICAL RECORDS AN UPDATE PROVIDED BY THE OTFORD PATIENT PARTICIPATION GROUP (PPG) Background to this Update There are a lot of articles in the press and on television and radio about care.data and

More information

Biobanks: DNA and Research

Biobanks: DNA and Research f r o m b i r t h to death a n d b e n c h to clinic THE HASTINGS CENTER Bioethics Briefing Book for Journalists, Policymakers, and Campaigns Chapter 3 Biobanks: DNA and Research Karen J. Maschke, Biobanks:

More information

Genes for Good Consent Form

Genes for Good Consent Form Genes for Good Consent Form Version 2.1 The next few screens contain information about Genes for Good and the benefits and risks of participating. This is called "informed consent", because we want you

More information

Patient Handbook on Stem Cell Therapies

Patient Handbook on Stem Cell Therapies Patient Handbook on Stem Cell Therapies Appendix I of the Guidelines for the Clinical Translation of Stem Cells www.isscr.org 2008, International Society for Stem Cell Research 2 Introduction We have all

More information

Genetic conditions and insurance. What you need to know and what you need to tell

Genetic conditions and insurance. What you need to know and what you need to tell Genetic conditions and insurance What you need to know and what you need to tell About this booklet This information booklet has been produced to provide accessible and impartial information for people

More information

Rethink 2008 www.rethink.org. the mental health act. essential information for parents and carers

Rethink 2008 www.rethink.org. the mental health act. essential information for parents and carers Rethink 2008 www.rethink.org the mental health act essential information for parents and carers 1 About Rethink Rethink, the leading national mental health membership charity, works to help everyone affected

More information

BRECHIN MEDICAL PRACTICE. Practice Information Booklet

BRECHIN MEDICAL PRACTICE. Practice Information Booklet BRECHIN MEDICAL PRACTICE Practice Information Booklet WELCOME to Brechin Medical Practice. We hope this booklet will give you all the information that you require about the services provided by our Primary

More information

Loughborough University races to the top of the Lloyds Bank Quality of Student Life Survey

Loughborough University races to the top of the Lloyds Bank Quality of Student Life Survey This is the second Lloyds Bank University Quality of Student Life Survey. The survey covers 89 institutions where comparable data is available. Data has been gathered from a number of sources, including

More information

A Guide to Clinical Trials

A Guide to Clinical Trials A Guide to Clinical Trials For young people with cancer and their parents Children s Cancer and Leukaemia Group www.cclg.org.uk Original booklet produced in conjunction with the CCLG Patient Advocacy Committee.

More information

The RADICALS trial Radiotherapy Timing Randomisation (RADICALS-RT) Clinical trial of treatment after surgery for prostate cancer

The RADICALS trial Radiotherapy Timing Randomisation (RADICALS-RT) Clinical trial of treatment after surgery for prostate cancer Stoke Mandeville Hospital Mandeville Road Aylesbury Buckinghamshire HP21 8AL Tel: 01296 315 908 www.buckshealthcare.nhs.uk The RADICALS trial Radiotherapy Timing Randomisation (RADICALS-RT) Clinical trial

More information

Safe and secure use of personal health information

Safe and secure use of personal health information Safe and secure use of personal health information Who is this leaflet for? This leaflet is for anyone who uses any of the services provided by the NHS in Scotland. It has been produced by Health Protection

More information

Phasel clinical trials:

Phasel clinical trials: Phasel clinical trials: what are they all about? Information for people wanting to know more about early clinical trials in cancer, Belfast City Hospital NORTHERN IRELAND CANCER TRIALS CENTRE Introduction

More information

If you wish to visit with a partner, there is an additional fee of 24, although this may be partially covered by your institution.

If you wish to visit with a partner, there is an additional fee of 24, although this may be partially covered by your institution. Application Fees For students at subscribing institutions, there is an application fee of 60 for each weekend visit applied for and 30 + VAT for each day visit applied for. Your university may choose to

More information

UK Biobank. Consent. Version 1.0. http://www.ukbiobank.ac.uk/ 8/4/2011

UK Biobank. Consent. Version 1.0. http://www.ukbiobank.ac.uk/ 8/4/2011 Version 1.0 http://www.ukbiobank.ac.uk/ 8/4/2011 This manual details the process at an Assessment Centre of the UK Biobank. Also detailed are aspects of privacy, security of medical information and rights

More information

PATIENT INFORMATION SHEET KEY FACTS

PATIENT INFORMATION SHEET KEY FACTS PATIENT INFORMATION SHEET KEY FACTS Please read this carefully and refer to the full information sheet You are invited to take part in a research study, comparing subcutaneously (injection under skin)

More information

2010 No. 2618 EDUCATION, ENGLAND. The Education (Recognised Bodies) (England) Order 2010

2010 No. 2618 EDUCATION, ENGLAND. The Education (Recognised Bodies) (England) Order 2010 STATUTORY INSTRUMENTS 2010 No. 2618 EDUCATION, ENGLAND The Education (Recognised Bodies) (England) Order 2010 Made - - - - 26th October 2010 Coming into force - - 30th November 2010 The Secretary of State

More information

The Blood Donor BIOBANK

The Blood Donor BIOBANK The Blood Donor BIOBANK the first successful combination of blood donation and biobanking for medical research 1 1 Zoglmeier et al., TRANSFUSION 2011, 51(5): 1121-1122 Dr. Franz Weinauer SWISSTRANSFUSION

More information

Guidelines for health professionals about DNA / Biobanking in Europe

Guidelines for health professionals about DNA / Biobanking in Europe Guidelines for health professionals about DNA / Biobanking in Europe BIOBANKING SUMMARY A "biobank" is a: "service unit, non-profit organization for the collection and preservation of biological material

More information

Report Update on National Research Funding July 2014

Report Update on National Research Funding July 2014 Report Update on National Research Funding July 214 1 in 5 people who die under the age of 6 die of 1 a brain tumour With one in 5 people who die under the age of 6 (from all causes) dying of a brain tumour

More information

Recognition of UK degrees in Singapore

Recognition of UK degrees in Singapore Contents 1 General 2 Bona fide status of institutions 2a Association of Commonwealth Universities 3 Recognition by professional bodies 3a Accountancy 3b Architecture 3c Dentistry 3d Engineering 3e Land

More information

MRS Guidelines for Business-to-Business Research. October 2011

MRS Guidelines for Business-to-Business Research. October 2011 MRS Guidelines for Business-to-Business Research October 2011 Updated September 2014 MRS is the world s largest association for people and organisations that provide or use market, social and opinion research,

More information

HPV is very common and usually clears up on its own

HPV is very common and usually clears up on its own What is HPV? All cervical cancers are linked to a very common virus called the human papillomavirus or HPV. HPV usually doesn t cause any harm and most people will be infected with it at some point in

More information

Work Matters. The College of Occupational Therapists Vocational Rehabilitation Strategy College of Occupational Therapists

Work Matters. The College of Occupational Therapists Vocational Rehabilitation Strategy College of Occupational Therapists Work Matters The College of Occupational Therapists Vocational Rehabilitation Strategy College of Occupational Therapists About the publisher The College of Occupational Therapists is a wholly owned subsidiary

More information

Does my project require review by a Research Ethics Committee?

Does my project require review by a Research Ethics Committee? National Research Ethics Service Does my project require review by a Research Ethics Committee? This algorithm is designed to assist researchers, sponsors and R&D offices in determining whether a project

More information

A Guide To Cord Blood Banking

A Guide To Cord Blood Banking A Guide To Cord Blood Banking For Families with Genetic Conditions Cord Blood Banking This leaflet is aimed at families who might be considering storing cord blood for the treatment of a child or other

More information

RESEARCH PARTICIPANT INFORMED CONSENT AND PRIVACY AUTHORIZATION FORM

RESEARCH PARTICIPANT INFORMED CONSENT AND PRIVACY AUTHORIZATION FORM If you are using Epic for this study, fax a copy of the signed consent form to 410-367-7382. Patient I.D. Plate RESEARCH PARTICIPANT INFORMED CONSENT AND PRIVACY AUTHORIZATION FORM Protocol Title: Application

More information

Asbestos: How mesothelioma patients could help the hospice

Asbestos: How mesothelioma patients could help the hospice Asbestos: How mesothelioma patients could help the hospice T H O M P S O N S F A C T S H E E T Claiming back hospice costs How it works Mesothelioma & compensation Over 2,000 people are diagnosed with

More information

Your health, your rights Feedback and complaints: how to have a say about your care and have any concerns and complaints dealt with

Your health, your rights Feedback and complaints: how to have a say about your care and have any concerns and complaints dealt with Your health, your rights Feedback : how to have a say about your care and have any concerns and complaints dealt with Who is this factsheet for and what is it about? This factsheet is for anyone who uses

More information

Easy Read. How can we make sure everyone gets the right health care? How can we make NHS care better?

Easy Read. How can we make sure everyone gets the right health care? How can we make NHS care better? Easy Read How can we make NHS care better? How can we make sure everyone gets the right health care? What can we do to make the NHS good now and in the future? How can we afford to keep the NHS going?

More information

Patient Information Leaflet: Part 1 select-d

Patient Information Leaflet: Part 1 select-d Patient Information Leaflet: Part 1 select-d Anticoagulation Therapy in SELECTeD Cancer Patients at Risk of Recurrence of Venous Thromboembolism Introduction This

More information

RESEARCH INVOLVING DATA AND/OR BIOLOGICAL SPECIMENS

RESEARCH INVOLVING DATA AND/OR BIOLOGICAL SPECIMENS RESEARCH INVOLVING DATA AND/OR BIOLOGICAL SPECIMENS 1. Overview IRB approval and participant informed consent are required to collect biological specimens for research purposes. Similarly, IRB approval

More information

Donating brain and spinal cord tissue for research

Donating brain and spinal cord tissue for research Donating brain and spinal cord tissue for research Thank you for taking the time to consider the donation of brain tissue for research into neurological diseases. Your interest in helping this research

More information

The ACCURE-UK Trial: The feasibility of undertaking Appendicectomy to impact upon the Clinical Course of UlceRativE Colitis

The ACCURE-UK Trial: The feasibility of undertaking Appendicectomy to impact upon the Clinical Course of UlceRativE Colitis The ACCURE-UK Trial: The feasibility of undertaking Appendicectomy to impact upon the Clinical Course of UlceRativE Colitis Patient Research Interview Information Sheet ACCURE-UK non-participants Version

More information

St Ann Street Medical Practice. Weekend Telephone Triage Scheme Making a Complaint

St Ann Street Medical Practice. Weekend Telephone Triage Scheme Making a Complaint St Ann Street Medical Practice Weekend Telephone Triage Scheme Making a Complaint Who can complain? Anyone who is receiving, or has received, NHS treatment or services can complain, as can anyone affected

More information

In recent years the number of DNA genetic tests that you can

In recent years the number of DNA genetic tests that you can Inside How accurate are the tests? 2 How useful are the tests? 2 What can Direct-to-Consumer DNA genetic tests tell me? 2 What happens to my personal information? 3 What protections are there in Australia?

More information

UK S # 1 STUDENT ACCOMMODATION SEARCH ENGINE

UK S # 1 STUDENT ACCOMMODATION SEARCH ENGINE ACCOMMODATION FOR STUDENTS PUBLISHES UK LEAGUE TABLE FOR STUDENT RENTS IN 65 CITIES - London still leads the way at 102 per week, compared to UK average of 60; Durham and Loughborough are the big movers

More information

1. Study title Is the title self explanatory to a layperson? If not, a simplified title should be included.

1. Study title Is the title self explanatory to a layperson? If not, a simplified title should be included. These guidelines apply to all research projects where human subjects are involved in the study GUIDELINES FOR RESEARCHERS PATIENT INFORMATION SHEET & CONSENT FORM The guidance, which follows, applies primarily

More information

How to complain about a doctor

How to complain about a doctor How to complain about a doctor Wales This booklet is for patients in Wales. Our procedures are the same throughout the UK, but healthcare and support organisations do vary. We have therefore also produced

More information

The 100,000 genomes project

The 100,000 genomes project The 100,000 genomes project Tim Hubbard @timjph Genomics England King s College London, King s Health Partners Wellcome Trust Sanger Institute ClinGen / Decipher Washington DC, 26 th May 2015 The 100,000

More information

A guide to prostate cancer clinical trials

A guide to prostate cancer clinical trials 1 A guide to prostate cancer clinical trials In this fact sheet: What is a clinical trial? Why are trials done? What are trials looking into at the moment? How are clinical trials done? Should I take part

More information

Human Research Protection Program University of California, San Diego ISSUES ON DNA AND INFORMED CONSENT

Human Research Protection Program University of California, San Diego ISSUES ON DNA AND INFORMED CONSENT Human Research Protection Program University of California, San Diego ISSUES ON DNA AND INFORMED CONSENT Regulatory changes will occur for investigators studying human DNA The recent acceleration and widening

More information

Site visit inspection report on compliance with HTA minimum standards. London School of Hygiene & Tropical Medicine. HTA licensing number 12066

Site visit inspection report on compliance with HTA minimum standards. London School of Hygiene & Tropical Medicine. HTA licensing number 12066 Site visit inspection report on compliance with HTA minimum standards London School of Hygiene & Tropical Medicine HTA licensing number 12066 Licensed under the Human Tissue Act 2004 for the storage of

More information

Macmillan Cancer Support Volunteering Policy

Macmillan Cancer Support Volunteering Policy Macmillan Cancer Support Volunteering Policy Introduction Thousands of volunteers dedicate time and energy to improve the lives of people affected by cancer. Macmillan was started by a volunteer and volunteers

More information

New Investigators. 2012 report

New Investigators. 2012 report New Investigators 2012 report Summary Cancer Research UK has a strong portfolio of fellowships to support new researchers at the start of their independent careers. We currently support our new investigators

More information

Annex C Data Quality Statement on Statistics Release: Adults with learning disabilities known to Scottish local authorities 2012 (esay)

Annex C Data Quality Statement on Statistics Release: Adults with learning disabilities known to Scottish local authorities 2012 (esay) Annex C Data Quality Statement on Statistics Release: Adults with learning disabilities known to Scottish local authorities 2012 (esay) Data quality The six dimensions of data quality as defined by the

More information

Make and register your lasting power of attorney a guide

Make and register your lasting power of attorney a guide LP12 Make and register your lasting power of attorney a guide Financial decisions including: running your bank and savings accounts making or selling investments paying your bills buying or selling your

More information

New medicines in Scotland

New medicines in Scotland NHS SCOTLAND New medicines in Scotland who decides what the NHS can provide? What is this factsheet about? This factsheet explains the process that medicines go through before NHS doctors in Scotland can

More information

NAVIGATING ETHICAL APPROVAL AND ACCESS IN SOCIAL CARE RESEARCH

NAVIGATING ETHICAL APPROVAL AND ACCESS IN SOCIAL CARE RESEARCH NAVIGATING ETHICAL APPROVAL AND ACCESS IN SOCIAL CARE RESEARCH January 2014 Preamble This document has been produced by the Scottish Government, the Association of Directors of Social Work (ADSW) and the

More information

University Business & Start-up Support

University Business & Start-up Support University Business & Start-up Support Below you will find a list of business and start-up support offer by Santander UK partner Universities: University of Aberdeen Scottish Institute for Enterprise Link:

More information

information for children and young people in wales

information for children and young people in wales information for children and young people in wales YOUR RIGHTS The United Nations Convention on the Rights of the Child sets out a list of rights that all children and young people everywhere in the world

More information

Mother s blood test to check her unborn baby s blood group

Mother s blood test to check her unborn baby s blood group Mother s blood test to check her unborn baby s blood group This leaflet explains why it is important to have a blood test to check the baby s blood group, so that only those who need it, receive anti-d

More information

Cord blood banking: information for parents

Cord blood banking: information for parents Cord blood banking: information for parents Published August 2006 by the RCOG Contents Page number Key points 1 About this information 2 What is cord blood? 2 Why is cord blood useful? 3 How is cord blood

More information

Genetic testing. The difference diagnostics can make. The British In Vitro Diagnostics Association

Genetic testing. The difference diagnostics can make. The British In Vitro Diagnostics Association 6 Genetic testing The difference diagnostics can make The British In Vitro Diagnostics Association Genetic INTRODUCTION testing The Department of Health published Our Inheritance, Our Future - Realising

More information

Informatics: Opportunities & Applications. Professor Colin McCowan Robertson Centre for Biostatistics and Glasgow Clinical Trials Unit

Informatics: Opportunities & Applications. Professor Colin McCowan Robertson Centre for Biostatistics and Glasgow Clinical Trials Unit Informatics: Opportunities & Applications Professor Colin McCowan Robertson Centre for Biostatistics and Glasgow Clinical Trials Unit Routine Data "routine data" is data collected as byproducts of clinical

More information

How to complain about a doctor

How to complain about a doctor How to complain about a doctor Scotland This booklet is for patients in Scotland. Our procedures are the same throughout the UK, but healthcare and support organisations do vary. We have therefore also

More information

Alzheimer s and. memory loss

Alzheimer s and. memory loss Alzheimer s and memory loss This leaflet aims to help you understand about memory loss, Alzheimer s disease and other forms of dementia. You can also find out how to get more information. It s for anyone

More information

BREAST CANCER. How to spot the signs and symptoms and reduce your risk. cruk.org

BREAST CANCER. How to spot the signs and symptoms and reduce your risk. cruk.org BREAST CANCER How to spot the signs and symptoms and reduce your risk cruk.org Breast cancer is the most common cancer in the UK. Around 8 in 10 breast cancer cases are in women aged 50 and over. Men can

More information

MENTAL HEALTH TRIBUNAL FOR SCOTLAND: RECORDS MANAGEMENT POLICY. Ensuring Information is Accurate and Fit for Purpose

MENTAL HEALTH TRIBUNAL FOR SCOTLAND: RECORDS MANAGEMENT POLICY. Ensuring Information is Accurate and Fit for Purpose MENTAL HEALTH TRIBUNAL FOR SCOTLAND: RECORDS MANAGEMENT POLICY Index: Introduction Information is a Corporate Resource Personal Responsibility Information Accessibility Keeping Records of what we do Ensuring

More information

Participant Invitation and Information Sheet MRI Test Run

Participant Invitation and Information Sheet MRI Test Run ON QE TRUST HEADED PAPER A randomised controlled trial of bariatric surgery versus a community weight loss programme for the sustained treatment of Idiopathic Intracranial Hypertension: the IIH:WT Trial

More information

Your Rights when you are at the Police Station Easy Read

Your Rights when you are at the Police Station Easy Read Your Rights when you are at the Police Station Easy Read This leaflet gives you important information about your rights when you are at the police station. By rights we mean important freedoms and supports

More information

The Importance of Sharing Medical Data

The Importance of Sharing Medical Data Diving into the Data Pool Exploring public views about the way medical data is shared Report from public event on 31 October 2013 Should it be easier for medical data to be shared to help research? What

More information

Modernising Scientific Careers. Scientist Training Programme (STP) Recruitment 2012. Frequently Asked Questions

Modernising Scientific Careers. Scientist Training Programme (STP) Recruitment 2012. Frequently Asked Questions Modernising Scientific Careers Scientist Training Programme (STP) Recruitment 2012 Frequently sked Questions 1 Contents General Questions Page 1 Which Universities will be offering the accredited Masters

More information

swine flu vaccination:

swine flu vaccination: swine flu vaccination: what you need to know Flu. Protect yourself and others. Contents What is swine flu?............... 3 About the swine flu vaccine....... 4 What else do I need to know?...... 8 What

More information

Advance Directives/ Decisions

Advance Directives/ Decisions Advance Directives/ Decisions Promoting end-of-life choices Introduction There are many different templates available for what were previously known as Living Wills and are now called Advance Directives

More information

PATIENT INFORMATION SHEET

PATIENT INFORMATION SHEET PATIENT INFORMATION SHEET Surgical and large bore pleural procedures in Malignant pleural Mesothelioma And Radiotherapy Trial (SMART trial) Stoke Mandeville Hospital Mandeville Road Aylesbury Buckinghamshire

More information

FINLAND ON A ROAD TOWARDS A MODERN LEGAL BIOBANKING INFRASTRUCTURE

FINLAND ON A ROAD TOWARDS A MODERN LEGAL BIOBANKING INFRASTRUCTURE Postrefereed, preprint version of the text published at European Journal of Health Law 2013(3)28994. Link to the publisher s website: http://www.brill.com/europeanjournalhealthlaw Sirpa Soini FINLAND ON

More information

Concordat and Moratorium on Genetics and Insurance

Concordat and Moratorium on Genetics and Insurance Concordat and Moratorium on Genetics and Insurance 2011 Introduction 1. The Government and the Association of British Insurers (ABI) believe the relationship between medical data and insurance underwriting

More information

sound advice on STUDENT FINANCE Student finance new full-time students 2016/17 www.studentfinancewales.co.uk SFW/FSHE/V16

sound advice on STUDENT FINANCE Student finance new full-time students 2016/17 www.studentfinancewales.co.uk SFW/FSHE/V16 sound advice on STUDENT FINANCE Student finance new full-time students 2016/17 www.studentfinancewales.co.uk SFW/FSHE/V16 What is Student Finance Wales? Student Finance Wales is a service provided by the

More information

The faecal occult blood (FOB) test

The faecal occult blood (FOB) test The faecal occult blood (FOB) test This information is an extract from the booklet, Understanding bowel cancer screening. You may find the full booklet helpful. We can send you a copy free see page 6.

More information

Family Focused Therapy for Bipolar Disorder (Clinical Case Series) Participant Information Sheet

Family Focused Therapy for Bipolar Disorder (Clinical Case Series) Participant Information Sheet Family Focused Therapy for Bipolar Disorder (Clinical Case Series) Participant Information Sheet Study Title: Family Focused Therapy for Bipolar Disorder: A Clinical Case Series) We would like to invite

More information

Systematic Reviews. knowledge to support evidence-informed health and social care

Systematic Reviews. knowledge to support evidence-informed health and social care Systematic Reviews knowledge to support evidence-informed health and social care By removing uncertainties in science and research, systematic reviews ensure that only the most effective and best-value

More information

Alzheimer s and memory loss

Alzheimer s and memory loss Alzheimer s and memory loss Introduction This introductory leaflet aims to help you understand about memory loss, Alzheimer s disease and other forms of dementia. You can also find out how to get more

More information

The Research Capability Programme. Peter Knight, Group Programme Director

The Research Capability Programme. Peter Knight, Group Programme Director The Research Capability Programme Peter Knight, Group Programme Director 11/03/2010 RESEARCH FOR PATIENT BENEFIT WORKING PARTY FINAL REPORT For us, science and research constitute a front-line service,

More information

Legal and governance framework

Legal and governance framework Annex A Legal and governance framework This annex is a brief guide to the legal and governance framework relevant to research in the UK. It is not intended to be a comprehensive statement of the law or

More information

Information Governance Statement: Protocol on data collected by the audit

Information Governance Statement: Protocol on data collected by the audit Information Governance Statement: Protocol on data collected by the audit Definitions Within this document, the commissioning body, Healthcare Quality Improvement Partnership, will be referred to as HQIP.

More information

Standards of conduct, ethics and performance. July 2012

Standards of conduct, ethics and performance. July 2012 Standards of conduct, ethics and performance July 2012 Reprinted July 2012. The content of this booklet remains the same as the previous September 2010 edition. The General Pharmaceutical Council is the

More information